Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Beyond Celiac Announces Innovative Collaborative Research Effort: Go Beyond Celiac Digital Community

Scott Adams

By Scott Adams
in Publications & Publicity

Recommended Posts

Scott Adams Grand Master
Scott Adams
Posted
beyond_celiac_article_page_2_thumb.webp

Beyond Celiac has launched Go Beyond Celiac™, a digital community that will accelerate treatment options beyond the gluten-free diet. Go Beyond Celiac is designed to make it easier for people with celiac disease to share their stories at a population level with researchers and to participate in research themselves.

View the full article

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Victoria1234 Experienced
Victoria1234
Posted
2 hours ago, admin said:

beyond_celiac_article_page_2_thumb.webp

Beyond Celiac has launched Go Beyond Celiacâ¢, a digital community that will accelerate treatment options beyond the gluten-free diet. Go Beyond Celiac is designed to make it easier for people with celiac disease to share their stories at a population level with researchers and to participate in research themselves.

View the full article

This is pretty amazing to me. Does this mean they feel that way after being diagnosed? Because by definition people with celiac disease are diagnosed. Is this before they go gluten-free?

people with celiac disease report a very high burden of disease, comparable to end stage renal disease

 

Scott Adams Grand Master
Scott Adams
Posted
  • Author

My take on it is even after a gluten free diet many will not fully recover, and some will have additional complications. When not on a gluten-free diet the risk of complications is very high indeed...

Victoria1234 Experienced
Victoria1234
Posted

But to compare having celiac disease to kidney failure? Kidney failure means death is immenent unless you get a transplant, right?  I thought celiac disease was not so hopeless! Am I in denial?

Gemini Experienced
Gemini
Posted
1 hour ago, Victoria1234 said:

But to compare having celiac disease to kidney failure? Kidney failure means death is immenent unless you get a transplant, right?  I thought celiac disease was not so hopeless! Am I in denial?

No, you are not in denial!  I think that these studies often involve those who are not doing as well as they would like but that can be from so many different reasons. They may be making mistakes with the diet, they may have other health issues that come into play or just are not adjusting to the diet very well.  Sometimes it surprises me how many resent having to follow a medical diet that seems insurmountable to them and that can add stress....and we all know what stress can do.  I actually filled out the survey to let them know there are some of us with multiple AI disorders that are doing pretty well and are having little to no problems following the diet. I think a lot of it is perspective. I am just one who refuses to let all this do me in. I worked hard at healing and although things are not perfect, most of my grief is from my other AI problems and not Celiac.

My brother had kidney disease from Type 1 diabetes and believe me, there is no comparing Celiac to that.  With Celiac, there is a lot of hope because we can get better from a diet.  My brother was facing a kidney transplant but he died before that happened. I think he had Celiac also but he was in deep denial. Not following a gluten-free diet when you may have Celiac will definitely rob you of quality of life!

Victoria1234 Experienced
Victoria1234
Posted
10 hours ago, Gemini said:

No, you are not in denial!  I think that these studies often involve those who are not doing as well as they would like but that can be from so many different reasons. They may be making mistakes with the diet, they may have other health issues that come into play or just are not adjusting to the diet very well.  Sometimes it surprises me how many resent having to follow a medical diet that seems insurmountable to them and that can add stress....and we all know what stress can do.  I actually filled out the survey to let them know there are some of us with multiple AI disorders that are doing pretty well and are having little to no problems following the diet. I think a lot of it is perspective. I am just one who refuses to let all this do me in. I worked hard at healing and although things are not perfect, most of my grief is from my other AI problems and not Celiac.

My brother had kidney disease from Type 1 diabetes and believe me, there is no comparing Celiac to that.  With Celiac, there is a lot of hope because we can get better from a diet.  My brother was facing a kidney transplant but he died before that happened. I think he had Celiac also but he was in deep denial. Not following a gluten-free diet when you may have Celiac will definitely rob you of quality of life!

I am so sorry about your brother.

Thank you for your response. I really appreciate it. It just did not make any sense to me, but now it does. These Articles  tend to amplify the bad and the ugly and not emphasize the good.

Gemini Experienced
Gemini
Posted
7 hours ago, Victoria1234 said:

I am so sorry about your brother.

Thank you for your response. I really appreciate it. It just did not make any sense to me, but now it does. These Articles  tend to amplify the bad and the ugly and not emphasize the good.

Thank you.......I do really miss him. 

That is what my take is and it might be because those who are doing well are not being heard from as they are just going about their lives and aren't in a doctors office that much.  Doctors are only going to report on those who are having difficulties but they don't seem to differentiate why that might be. Lots of us have other AI problems and those come into play also.  It all may not be from Celiac Disease itself.  Doctors are also not really good with dietary treatments anyway because they offer little support. They always think you need a pill to get better.  What I realized after seeing a new PCP last year, one I did not like, is that they seem to think you can't do this well yourself and need to see a doctor all the time for management with Celiac.  I guess we are good for business.  ;)  I just am sick and tired of all the negative with this disease. I would rather eat gluten free than go through any treatment they offer because I just can't imagine putting wheat in my mouth ever again, even if they did come up with a magic pill.  It just doesn't seem like the right thing to do!  I will be interested to see if other people join to report positive results and mostly stable health.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Victoria1234 Experienced
Victoria1234
Posted
4 hours ago, Gemini said:

I will be interested to see if other people join to report positive results and mostly stable health.

I hope they do. I certainly have! The surveys were very easy to do.

Gemini Experienced
Gemini
Posted

I just wanted to say I hope everyone, especially the newbies to Celiac, go on line and join Beyond Celiac.  Even if you don't fill out the surveys, which are kind of fun to do, there is a WEALTH of information on everything Celiac, including recipes and how to get started on the diet and manage it well.  Between Celiac.com and Beyond Celiac, you can probably get any questions answered that you may have and find information you didn't think about.  It's a great site!

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. trents
      - trents replied to Roses8721's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      GI DX celiac despite neg serology and no biopsy

      Certainly, it would b wise to have a gene test done if your physician is open to it as it would provide some more data to understand what's going on. But keep in mind that the genetic test for celiac disease cannot be used as to diagnose celiac disease, only to establish the potential to develop active celiac disease. About 40% of the general population possess...
    2. Roses8721
      - Roses8721 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      gluten-free Oatmeal

      Had Quaker gluten-free oatmeal last night and my stomach is a mess today. NO flu but def stomach stuff. Anyone else?
    3. Roses8721
      - Roses8721 replied to Roses8721's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      GI DX celiac despite neg serology and no biopsy

      So you would be good with the diagnosis and not worry to check genetics etc etc? Appreciate your words!
    4. Scott Adams
      - Scott Adams replied to Ginger38's topic in Related Issues & Disorders
      5

      Shingles - Could It Be Related to Gluten/ Celiac

      As recommended by @Flash1970, you may want to get this: https://www.amazon.com/Curist-Lidocaine-Maximum-Strength-Topical/dp/B09DN7GR14/
    5. Scott Adams
      - Scott Adams replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Challenges eating gluten before biopsy

      For those who will likely remain gluten-free for life anyway due to well-known symptoms they have when eating gluten, my general advice is to ignore any doctors who push to go through a gluten challenge to get a formal diagnosis--and this is especially true for those who have severe symptoms when they eat gluten. It can take months, or even years to recover...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,474
    • Most Online (within 30 mins)
      7,748
    Silk tha Shocker
    Newest Member
    Silk tha Shocker
    Joined
  • Celiac.com Sponsor (A20):

  • Celiac.com Sponsor (A22):



  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • trents
      GI DX celiac despite neg serology and no biopsy

      By trents · Posted

      Certainly, it would b wise to have a gene test done if your physician is open to it as it would provide some more data to understand what's going on. But keep in mind that the genetic test for celiac disease cannot be used as to diagnose celiac disease, only to establish the potential to develop active celiac disease. About 40% of the general population possess one or both of the primary genes known to be associated with the development of active celiac disease but only about 1% of the population actually develop active celiac disease. So, the gene test is an effective "rule out" tool but not an effective diagnostic tool.
    • Roses8721
      gluten-free Oatmeal

      By Roses8721 · Posted

      Had Quaker gluten-free oatmeal last night and my stomach is a mess today. NO flu but def stomach stuff. Anyone else?
    • Roses8721
      GI DX celiac despite neg serology and no biopsy

      By Roses8721 · Posted

      So you would be good with the diagnosis and not worry to check genetics etc etc? Appreciate your words!
    • Scott Adams
      Shingles - Could It Be Related to Gluten/ Celiac

      By Scott Adams · Posted

      As recommended by @Flash1970, you may want to get this: https://www.amazon.com/Curist-Lidocaine-Maximum-Strength-Topical/dp/B09DN7GR14/
    • Scott Adams
      Challenges eating gluten before biopsy

      By Scott Adams · Posted

      For those who will likely remain gluten-free for life anyway due to well-known symptoms they have when eating gluten, my general advice is to ignore any doctors who push to go through a gluten challenge to get a formal diagnosis--and this is especially true for those who have severe symptoms when they eat gluten. It can take months, or even years to recover from such a challenge, so why do this if you already know that gluten is the culprit and you won't be eating it anyway?  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS--but those in this group will usually have negative tests, or at best, elevated antibodies that don't reach the level of official positive. Unfortunately test results for celiac disease are not always definitive, and many errors can be made when doing an endoscopy for celiac disease, and they can happen in many ways, for example not collecting the samples in the right areas, not collecting enough samples, or not interpreting the results properly and giving a Marsh score.  Many biopsy results can also be borderline, where there may be certain damage that could be associated with celiac disease, but it just doesn't quite reach the level necessary to make a formal diagnosis. The same is true for blood test results. Over the last 10 years or so a new "Weak Positive" range has been created by many labs for antibody results, which can simply lead to confusion (some doctors apparently believe that this means the patient can decide if they want more testing or to go gluten-free). There is no "Weak Negative" category, for example. Many patients are not told to eat gluten daily, lots of it, for the 6-8 week period leading up to their blood test, nor asked whether or not they've been eating gluten. Some patients even report to their doctors that they've been gluten-free for weeks or months before their blood tests, yet their doctors incorrectly say nothing to them about how this can affect their test, and create false negative results. Many people are not routinely given a total IGA blood test when doing a blood screening, which can lead to false negative interpretations if the patient has low IGA. We've seen on this forum many times that some doctors who are not fully up on how interpret the blood test results can tell patients that the don't need to follow a gluten-free diet or get more testing because only 1 of the 2 or 3 tests done in their panel is positive (wrong!), and the other 1 or 2 tests are negative.  Dermatologists often don't know how to do a proper skin biopsy for dermatitis herpetiformis, and when they do it wrongly their patient will continue to suffer with terrible DH itching, and all the risks associated with celiac disease. For many, the DH rash is the only presentation of celiac disease. These patients may end up on strong prescriptions for life to control their itching which also may have many negative side effects, for example Dapsone. Unfortunately many people will continue to suffer needlessly and eat gluten due to these errors in performing or interpreting celiac disease tests, but luckily some will find out about non-celiac gluten sensitivity on their own and go gluten-free and recover from their symptoms. Consider yourself lucky if you've figured out that gluten is the source of your health issues, and you've gone gluten-free, because many people will never figure this out.    
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.